A few weeks ago, one of my co-workers asked me if Fibromyalgia was a real disease. Like, you know, she 20, and has heard it’s a disease made up in my brain or something. I really wanted to smack her, but you know, hitting someone is now not politically correct, I just walked away. But it’s been bugging me every since, and I wonder how much my friends and strangers really know what goes one with me. For those of you who don’t know, Fibromyalgia is a horrible incurable disease that makes my body feel stabbing, shooting and burning pains constantly as well as denying myself of essential non-REM sleep.
HOW IT BEGAN:
4 1/2 years ago I came home from a 19 day vacation COMPLETELY EXHAUSTED and the feeling never went away. Everyone, including my doctor, told me I was overworked. At that point, I had been working 2 jobs for 17 years, plus attending college either full or part time. So, I can see why they’d say that. I began drinking pop for energy. I was the girl who my friend’s mom told me to “shut up and wipe that smile off my face” because I was so happy in the morning, every morning, when she picked me up for high school. I was a chirpy girl who loved life and had great adventures across America. But I became more tired, and more stressed.
About 2 years ago it got worse, my hands started going numb, my arms ached, my shoulders ached, my hips started feeling really bad and my knees KILLED ME. My back and neck were on fire all the time. And then I got married at the most stressful point in my life, 4 weeks away from my college graduation. And then the real fun began. I decided that I must have Lupus, so I found a Rheumatoid specialist. We found out that I actually had Arthritis in both my knees, my back and my hips. And that I am at the beginning stages of Rheumatoid Arthritis, where your joints twist and my hands will get all curled up and narly, as well as having Fibromyalgia. Then we found out I needed spine surgery at the top and bottom of my spine. I have 1 bulged disk, 3 herniated disks, and 1 torn disk. My back hurts so bad I almost cry whenever I have to bend down to file at work, or pull out a pan from my cupboard. One disk is compressing my spine, another on my root nerve, so all night long I get shooting pain on the left side of my body. My hands swell every night, and 1 hand gets freaky cold. I have permanent ankle sock marks from my leg swelling. I also have tendonitis, and often can’t even open jars or use a can opener. I I have also gotten diagnosed with GERD, IBS, Asthma, and Rosacia in this same time period. I’ve always had Migraines and Insomnia, but nothing like I have now. I’ve went as many as 9 days without 0 hours of sleep. Oh, yeah, I get chronic Bronchitis & Pneumonia. and I’ve gotten UTI’s and Cysts on my ovaries. And, I had horrible, epic periods. They made me anemic, and deathly weak. My periods lasted 10 days, every 21 days. I actually just had surgery in December that has eliminated periods but made me sterile so that I could have one area of my life pain free. I am so happy for this releif! But I continue to go without sleep, and have horrible back and neck pain. I also have all the classic textbook symptoms of Fibro, such as:
- Depression;
- Light, odor, noise, and touch sensitivity;
- Numbness or tingling sensations in the hands and feet;
- Difficulty remembering, concentrating, and performing simple mental tasks;
- Frequent urination;
- Moodiness;
- Stiffness;
- Chest pain;
- Reduced tolerance for exercise and muscle pain after exercise;
- Dry eyes, skin and mouth;
- Dizziness and nausea;
- Anxiety; and my favorite
- Weight gain!!!
Stress makes all of this worse, and as some of you know, my job very stressful. And at times also very physical. By the time 8 pm rolls around, I’m on my heating pad. I can’t ever go out on a Friday night, as I have to lay down as soon as I get home. Everywhere I go I’m annoyed at the loud noise, lights, etc. I crave peace and quiet every second of my life. I feel like I’m actually crazy at times because I’ve always loved loud, wild, crazy places and I can’t believe how the slightest noise hurts me. I barely even listen to music as it makes me sick to my stomach.
I miss myself. I miss going out and having fun. I have to be DRAGGED out most of the time. I can’t even sit on the couch and watch movies with my family. If you want to see me, you have to come to my bedroom, or I have to lay flat out on the couch. This isn’t made up, and I wish more people would understand how frustrating it is to have an autoimmune disease. Every day I’m mad that this has happened to me, I want to wake up from a restful sleep and feel pain-free.
Just one day ….
Sending you (((hugs))), and sending your co-worker a kick in the ass.
I hope you don’t mind, but I’m going to link to this on my fibro blog. That you’re working while going through all of this puts me to shame. You’re one tough cookie. Take care.
By: moonbeammcqueen on March 10, 2008
at 11:42 PM
[...] 11, 2008 …about one woman’s experience with fibro. Recommended reading! Posted in Fibromyalgia, Health, chronic pain | Tagged chronic pain, employment, fibro, [...]
By: A Good Read « FibromyOWgia on March 10, 2008
at 11:45 PM
Oh my god. I love this post because you have described it so accurately. I love your comical graphics too because they are so appropriate and on-target. I too have fibro and met Moonbeam through searching about fibro online. I will add you to my blogroll. God, I totally know the desire to sleep one night, all the way through, uninterrupted and pain free and get the REM sleep.
Hugs to you and hope you go easy on that coworker. They just don’t know. I had a friend today ask me if I wanted to get together and go for a walk. Uh, no. Sorry. They just don’t get it.
By: Little Miss on March 11, 2008
at 12:34 AM
I know exactly how you feel. People are often confused about this syndrome. Unless you have it or live with someone who does, it is just really hard to understand. But, every time someone is confused I try and sit down and explain this syndrome. If we don’t spread the world who will? I hope your co-worker is now enlightened.
By: Dana on March 11, 2008
at 1:26 AM
I don’t mind at all … and thank you Monnbeam!
By: thegirlfromtheghetto on March 11, 2008
at 7:06 AM
Been there. done that.
Treated lots of ladies (and a couple men) with the same.
My own pain helped me be a better doctor…
By: Nancy Reyes on March 11, 2008
at 7:27 AM
You’re a walking medical case!!! (said in the most positive way)… way too much for one person!!!!
By: Holly on March 11, 2008
at 8:56 PM
Yeah … not very happy today …
By: thegirlfromtheghetto on March 11, 2008
at 9:13 PM
reading all that you have written I hoped would help me feel better, and for a while it really does. Others who are really there, out there and its not just my freaky life.
can anyone tell if if they have lost the use of the hands or one hand, like no grip,drop things cos you forget….
this has been my life too for almost 10 years, but its now making me bitter and twisted and i cry toooooo much.
By: catherine on June 23, 2008
at 11:59 AM
the icarecafe would really like your help with a discussion on Fibromyalgia
As you many know the icarecafe has been set up to provide a space for patients, carers and their supporters online.
Some of the members have set up a discussion group on the subject of Fibromyagia. The group has asked lots of questions which are still in the process of being answered. So we thought it appropriate if we invited people from other Fibromyalgia discussion group and blogs to ask if they wished to participate.
To have a look at the discussions so far please have a look at
http://www.icarecafe.com/?page_id=1107&group_id=36
Please do feel free to join in the discussions and to post any information which might be of interest to our members.
If you have any questions please feel free to get in touch. I’m one of the moderators of the icarecafe and I can be contacted by sending and internal email to my profile.
Thanks very much in advance for your help!
Best wishes
Belinda Shale
Moderator – the icarecafe
http://www.icarecafe.com
By: icarecafe on September 15, 2008
at 7:59 AM
Thanks so much for your honest comments. My mom has had fibro for years. It is so hard to watch someone else suffer and to try and understand this horrible illness. I appreciate you taking the time to write.
By: Jan Krygier on October 6, 2008
at 9:46 PM
Jan, I appreciate you for commenting! Fibro sucks and its always nice to hear other people are going through the weirdness with you. I’m very sorry about your mom!
By: thegirlfromtheghetto on October 7, 2008
at 7:23 AM
I’ve been researching for many years on what my symptoms can be. I’ve gone from forum to forum trying to figure out my problem.
At first I was referred to Lyme disease – and even spoke to a specialist, but I have had problems before I was even bit by a tick.
Someone referred me to a Fibromyalgia site – and I was suprised at how much of the symptoms bother me. I’m just like you – to the “T”.
I used to be a lucky go happy person, the energy of the Energizer bunny… now you can barely get me out the door. I’m a robot programmed to “do”, even if pain is bothering me.
When I get home from work, I will make dinner and just bum… I just don’t have the energy for anything else.
Most weekends, I just DON’T want to go out and do anything – unless it involves relaxation of some sort. I dred shopping, or “running around”. I can barely stay awake past 10… if I do, I feel like death the next day.
I’ve been from one doctor, to the next to the next over the past 10 years about one health problem to the next. Some have told me to “suck it up… it’s in your head”, some had prescribed me medications (Nexium, Symbicort, Quinine Sulfate….. etc).
I’ve learned to ignore many of my symptoms… but now that some are happening more frequently – I’ve started to really rethink my health.
Visiting a doctor today, hopefully she can help shed some light for me.
I hope you are having a better day today.
By: Tammara on October 21, 2008
at 12:38 PM
I, too, have FM and disk problems. It is terrible, but I have to say, it sounds like nothing next to
what you are going thru. My heart goes out to you and I will remember you in my prayers
By: ginny on December 2, 2008
at 10:38 PM
I, too have FM and disk problems. It is terrible, but I have to say, it sounds like nothing next to what you are going thru. My heart goes out to you and I will remember you in my prayers.
By: ginny on December 2, 2008
at 10:41 PM
I seem to have this issue too. It runs in my family. My sister, dad and I all have the same syptoms.
I have found that diet plays a big roll in the problem. I have tried Atkins two or three times and each time I see a markerd improvement in my symptoms. This led me to think it was insluin causing the problems of fibro.
However I have done more research and it may be what I am eating during the atkins. Namely the carnitine in all the red meat.
Carnitine is the energy producer and a lack of it will cause musle pain. Most doctors do not bother to look for this in blood test because it is produced by the body. However the sysptoms of carnitine defienceny mirror those of Fibro. esp the fatgiue, weight gain, aches and pains within the muscles. Your back needs strong mucsles to keep proper alignement. Knees and joints need strong muscles to help stop compression of the joints.
Because Atkins relieves my pain I know it has something to do with diet.
By: unseen on March 14, 2009
at 10:57 AM
Just came across this, & hoping all who suffer from this horrible illness will find relief! I have lost the last 15 years of my life to this. It destroys you slowly, and consumes your desire to live… because everything is in a fog, and everything hurts, and everything you once enjoyed only causes you even more pain than you’re already in.
On to the positive though. A new medication was approved in the U.S. in January 2009. It has honestly saved my life!!
It is called SAVELLA. I put it in caps because I want everyone to know about it. Run, though that would be painful, (trying to add a little humor) but seriously get to your Dr. and ask about it! It took some work adjusting the right level for myself, but has been well worth it.
It removed the pain all over, and took away the fibro-fog, and for the first time in 15 years i feel like me again. It has been a miracle for me, & I hope it will soon be helping many others!
Best wishes, don’t give up!
By: Jneen on July 1, 2009
at 5:11 PM
Thanks Jneen. I’m sorry to hear about all of your troubles. I don’t take any pain medication, and even now, after my abdominal hysterectomy I am pain medicine free. They only thing that works is morphine. i’m very sensitive to most medications, sadly. I am glad that this drug is working for you at least!
By: thegirlfromtheghetto on July 1, 2009
at 7:17 PM